Why are kids waiting so long for mental health services?

When Kim Moran’s 11-year old daughter stopped wanting to go to school, Moran knew something was wrong. She immediately sought help from their family doctor. After a quick exam, he concluded nothing was “medically” wrong with Moran’s daughter. At Moran’s insistence, he referred her daughter to a mental health professional, but without any estimated wait time or details. So they waited… and waited.

“She became very ill right before my eyes. I knew there was something big going on and as a parent, I couldn’t get help. I harassed the doctor and he was like, ‘Oh well, someone will phone you.’ But nobody was phoning,” says Moran.

Frustrated and worried, she paid out of pocket for her daughter to see a child psychologist, who deemed her daughter severely clinically depressed, but was unable to provide any treatments. Only a licensed physician could do that. Moran then took her daughter to the emergency department where the diagnosis of depression was confirmed. But her daughter wasn’t high risk enough to be admitted and the waitlist for the community treatment program was over one year. Ultimately help did come more quickly, largely because Moran’s daughter attempted suicide. After more than 18 months of intense community treatment, she transitioned back to school and is now doing well.

A broken, underfunded system

Today, Moran is CEO of Children’s Mental Health Ontario (CMHO), an association dedicated to promoting a high-functioning mental health system for Ontario children and youth.

She says the major problem with access is that care is divided into silos that were never designed to work together. This is in part because funding comes from three different government bodies: the Ministry of Education (funding school-related programs and services), the Ministry of Child and Youth Services (funding community-based treatment programs) and the Ministry of Health (which funds medical care and doctors). The programs for mental health under each of these umbrella organizations don’t always have an easy way of sharing data or coordinating services.

“We constantly hear about the various ways in which it is hard for young people and their families to access mental health services—because of long wait times, restrictive service hours, distance or transportation barriers, lack of appropriate services, confusion, and a range of other challenges,” says Moran.

Many families find themselves seeking care in the emergency department (ED), as Moran herself did. According to a 2017 report from the Canadian Institute for Health Information (CIHI), ED visits for mental health for youth between the ages of 5–24 rose 63 percent over the past 10 years. And mental health admissions in this age group rose more than 67 percent. This is in a period where we’ve seen an 18 percent decrease in youth hospitalizations overall, while the prevalence of children’s mental health disorders has remained static.

Demand may be increasing for services as the stigma around mental health is declining. But perhaps a bigger contributor is the underfunding of community resources—things like mental health centres, family counselling, or addictions programs that bring care out of hospital settings. According to the Auditor General of Ontario, there have only been two base funding increases for child and youth mental health centres since the early 1990s: Three percent in 2003 and five percent in 2006. These increases have not come close to keeping up with inflation. In fact, it is estimated that the capacity of community agencies to deliver timely care to children and youth has been diminished by 50 percent in the last 20 years.

According to data provided by CMHO, there is a continuum of five levels of child and youth mental health needs that range from “wellness and health promotion” on one end of the spectrum to “mental health crisis” on the other end. It’s in the middle of the continuum—mental health issues with mild to severe impairment in function—where the biggest gaps lie in care capacity and coordination amongst the three ministries.

“It’s kind of like a classic bottleneck problem. You’ve got hospitals which people know about, you’ve got primary care and schools which people know about, and then you’ve got this little tiny system in between based in the community that’s really important and that connects all this stuff, but nobody knows how to access it and it isn’t funded properly,” says Moran.

Related Faces of Health Care

“Young people say they want to talk to someone who’s been there; they want someone with lived experience.”

Early identification in schools

While primary care physicians have an important role in identifying mental and developmental health issues, schools are also on the very front line. Laura Smith*, a special education teacher for a Toronto-based school, says teachers are often the first ones to notice there is a mental or behavioural issue in a child.

“A lot of times parents don’t understand because this is the only child they’ve had. When their child is unable to speak or can’t seem to play with other children, they don’t see this as an issue. It might be something they’ve never even discussed with the doctor,” she says.

In 2011, Ontario implemented a strategic program called School Mental Health Assist (SMH-ASSIST), a provincial support team designed to help Ontario school boards promote student mental health and well-being. Part of this program includes increased training for teachers to identify mental health issues early on. Smith says that when a child is identified, the school has some tools to use in the short term, including education assistants and individualized education plans. They also have access to interdisciplinary professional teams that include a speech pathologist, a social worker, and a school psychologist, but these teams typically serve 10–20 other schools.

But both Moran and Smith say schools need assistance from community agencies and the medical system to properly care for kids. After a child is identified, a doctor is usually needed to make a diagnosis or refer to the appropriate specialist who can. They can also help navigate the child toward the most appropriate community agency to support the family. Even though schools have their own psychologists, the waitlist can be two–three years and their priority is assessing for learning disabilities.

Currently, there is little in place to help families facilitate communication between schools and doctors. “We have a case right now, the child is in Grade 2, severe mental health issues, at least from our opinion… The child threatened to kill himself, in the middle of the class with a pair of scissors. All we got back [from his doctor] was a one-line letter saying he’s fine and ready to come back to school.” Smith says her team does as much as they can with the resources at their disposal, but many kids are left in limbo until they receive a formal medical assessment.

Sloane Freeman, a pediatrician with the St. Michael’s Inner City Health Program, is piloting a program that embeds a medical team—including a family doctor, pediatrician and developmental specialist—within the existing school-based team. Her team attends monthly school support meetings where they discuss at-risk kids. They also will see children who need a medical or developmental assessment within a few weeks onsite.

“We realized that by becoming an integrated team, by working together with the school board, we could much better identify the kids who have these developmental issues and expedite a diagnosis and a treatment plan,” says Freeman.

What are we working toward?

Ian Zenlea, physician co-lead for the Medical Psychiatry Alliance (MPA) Child & Youth Project at Trillium Health Partners, says there needs to be an integrated, networked system of care that is straightforward to access. “Once we’ve identified those at risk, whether at a school or clinic, we need to make sure we’ve properly invested in a system of services to send them to,” he says.

His team has implemented a mental health screening tool that he uses in his pediatric obesity clinic (kids with chronic illnesses, like obesity, have a higher risk of concurrent mental illness). They have also developed a telehealth referral system to psychiatry at Sick Kids, which can see patients within a few weeks. This helps expedite a formal diagnosis so they can be referred to the appropriate community programs more quickly.

Zenlea adds that there needs to be appropriate service capacity in all the places kids already are, like schools. He says that there should be a range of options for families to go to for basic services, like stress management, that programs should be adequately staffed to meet community needs, and that all of the relevant partners should be networked and coordinated.

This is something Kathy Sdao-Jarvie, chief officer of system planning and accountability for the government-funded Peel Children’s Centre (PCC), is working on. As a Ministry of Children & Youth Service–appointed lead agency for mental health, PCC is working with their regional partners—each of which has built their own independent service and intake system over the years—as well as patients and families to create a simpler system for their clients to access. These changes are in line with the Ministry’s 2012 Moving on Mental Health strategy.

“If you’re a parent and you don’t know where to start, potentially you can knock on six different doors, depending on the age of your child, before you get help,” she says.

Her organization has helped streamline their regional intake process for mental health and aims to book intake appointments within two weeks of initial referral. They field outside inquiries and have developed walk-in services. They are working toward allowing third parties—such as school social workers and special education teachers—to refer directly to them (with consent) without needing a formal diagnosis from a doctor. They will soon be launching a rebrand of the entire Peel intake network called “Where to Start.”

“We are doing our best to make access simple,” says Sdao-Jarvie, “but there’s always going to be a wait time for services until we have a funding formula that’s equitable across service systems and service areas.”

The Ontario government recently announced $2.1 billion in funding to be invested over four years in mental health, of which $570 million are dedicated to youth specifically. Both Moran and Sdao-Jarvie are optimistic that this injection of funding will help add some of the capacity that the system sorely needs.

Moran believes the key priority should be to adequately fund community mental health resources. “For me, with a kid who had a serious illness, community treatment was really important but it is probably the least talked about part of the system,” she says. “If we put $120 million into the community system, it might save us $190 million in acute care. But the lifetime savings are enormous. If my daughter had gotten care very quickly, she might have not ended up in a crisis and lost two years of her childhood.”

Enter the debate: reply to an existing comment

4 comments

Ted BallMay 4th, 2018 at 10:50 am

While the Ontario Liberal Liberal budget speech contained an announcement of $2.1 billion for mental health over the next four years, when you go into the budget papers, it appears that there is only $1.3 billion set aside–and that money appears to be the federal government’s transfer payment.

So, the Liberals were shocked when the Tory platform under Patrick Brown promised $3.8 Billion in mental health funding. They scrambled to “match”, or better, their political competition–announcing $2.1 billion in the speech (the essential PR hit), and then failing to actually budget the money. Since they will be reduced to less than 10 seats on June 7th, it really does not matter. The Doug Ford Tories have restated their commitment for matching the federal government’s $1.9 billion over 10 years. So, our mental healthcare delivery system for children, youth, and adults will finally get the resources they actually need.

What is amazing is that some people actually believed that the Gliberals had–after 15 years of neglect–finally come around to do the right thing. Nope! Just political gamesmanship. Looking foreword to finally have a mental health system with adequate funding–once the election is over.

It took us two years to get a diagnosis for our daughter. Two years of taking my daughter to different doctors -general paediatricians and developmental paediatricians but they all said everything’s fine with my daughter. In school, she just stands in one corner and doesn’t participate or talk to her teachers or classmates. Two years of her kindergarten were wasted because when we were referred to a local children’s treatment centre in 2015, she was rejected and as parents we were responsible to look for doctors who should help us to get a diagnosis. Good thing her J.K. teacher got help from a school speech pathologist and every year, our daughter gets a new one. Before the school ends of her S.K. I asked for a referral from the current speech pathologist who referred us directly to the clinical psychologist at the children’s treatment centre then we are back to square one. Waiting time the social worker said would be about 18 to 24 months for my daughter to get into Ontario Autism Program. I hope all government offices concerned here will have consistency and coordinated services to avoid confusion. I called different government and private offices since 2015 and some can help while we are waiting but we have to advocate for our children and it takes away all our time and energy from our family.

As a front-line mental health service provider for children and adults for over 30 yrs. I have noticed funding going to support the research, development and promotion of services, however the front-line workers are often poorly paid, and over-worked, as burn-out in the mental health field is prevalent. Now in private practice/research and development I find it almost impossible to find funding to help launch new programs or groups for children and families. Transfer payments are made to local service agencies who have 2 yrs. waiting lists, and individuals in practice, like myself, end up offering free services (sliding scale) because individuals without insurance/EAP converage cannot pay.

This document is provided under the terms of a CreativeCommons Attribution Non-commercial Share Alike license. The terms of the license are available at: http://creativecommons.org/licenses/by-nc-sa/3.0/. Attributions are to be made to HealthyDebate.ca, a project under the direction of Dr. Andreas Laupacis, at the Keenan Research Centre, Li Ka Shing Knowledge Institute of St. Michael’s Hospital.